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Navigable Slide Index

1. Introduction
2. Why focus on CNVs?
3. Outline
4. Existing guidelines on returning results
5. Should results be returned?
6. The NBAC report, 1999
7. Johnston and Kaye (2004) paper - UK Biobank
8. NIH GWAS points to consider
9. NHLBI working group 2006
10. Shalowitz and Miller
11. Ravitsky and Wilfond
12. Consensus and discussion
13. Returning CNV results
14. What about CNVs?
15. Arguments for returning CNV results
16. Rights of participant / ownership of data
17. Clinical significance
18. Reciprocity
19. Research imperative
20. Arguments against returning CNV results
21. Results are research only
22. Results don't have clinical significance
23. Phenotypic and genotypic heterogeneity
24. Avoiding CNV exceptionalism
25. Case study 1A: what results mean to families
26. Case study 1B: what results mean to families
27. Case study 2: clinical utility
28. Case study 3: right to know?
29. What we still need to know
30. Recommendations
31. Acknowledgements
32. References (1)
33. References (2)

Topics Covered

• Why focus on CNVs?
• Existing guidelines on returning results
• National Bioethics Advisory Commission
• UK Biobank
• NIH guidelines
• Arguments FOR returning CNV results
• Arguments AGAINST returning CNV results
• Avoiding CNV exceptionalism
• What results mean to families
• What we still need to know

Links

Series:

• Copy Number Variation

Categories:

• Genetics & Epigenetics

Talk Citation

Tabor, H. (2010, February 25). Ethical considerations in dealing with CNV information [Video file]. In The Biomedical & Life Sciences Collection, Henry Stewart Talks. Retrieved April 15, 2025, from https://doi.org/10.69645/RUNK3066.
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Publication History

• Published on February 25, 2010

Financial Disclosures

• Dr. Holly Tabor has not informed HSTalks of any commercial/financial relationship that it is appropriate to disclose.